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Author Topic: thinking about stopping my meds  (Read 6454 times)

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Offline tippytu

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  • Posts: 60
thinking about stopping my meds
« on: September 04, 2013, 07:29:27 PM »
Right now as it is I am thinking about stopping my meds...I am not a denialist & know I will eventually get sick but i wasn't ready for treatment. I dont know if I ever will be. As hard as I've tried I just can't accept this & taking pills twice a day reminds me of it...I just want to completely forget it even if for only a little while. I think I would have rather lived not knowing until I got sick. At least that way I would still feel like me & not hurt so much...

 I know probably noone will understand this....but its just how I feel right now

Offline Jeff G

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Re: thinking about stopping my meds
« Reply #1 on: September 04, 2013, 07:41:09 PM »
Right now as it is I am thinking about stopping my meds...I am not a denialist & know I will eventually get sick but i wasn't ready for treatment. I dont know if I ever will be. As hard as I've tried I just can't accept this & taking pills twice a day reminds me of it...I just want to completely forget it even if for only a little while. I think I would have rather lived not knowing until I got sick. At least that way I would still feel like me & not hurt so much...

 I know probably noone will understand this....but its just how I feel right now

I understand because I did the same thing . I gave up on myself , quit my meds and dropped out of sight . I got Kaposi sarcoma and some other very serious medical conditions by the time I decided I wanted to live .

I hear you loud and clear , its a cry for help . You are making decisions through a haze of depression but I absolutely have faith that if you seek help for your emotional health you will change your mind . I changed my mind but not before a lot of damage was done , wish I knew then what I know now . I was so afraid of dyeing that I forgot to live .

You deserve better and you know it so get off your butt and talk to your doctor and make it very clear to s/he that you want help and expect to get it . 

Offline wolfter

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Re: thinking about stopping my meds
« Reply #2 on: September 04, 2013, 07:42:59 PM »
Right now as it is I am thinking about stopping my meds...I am not a denialist & know I will eventually get sick but i wasn't ready for treatment. I dont know if I ever will be. As hard as I've tried I just can't accept this & taking pills twice a day reminds me of it...I just want to completely forget it even if for only a little while. I think I would have rather lived not knowing until I got sick. At least that way I would still feel like me & not hurt so much...

 I know probably noone will understand this....but its just how I feel right now

I'm sure you'll get a lot of responses as we've seen and witnessed the results of this disastrous decision.  I too made this idiotic decision a few years back due to grief and depression.  Being dead is the easy part, the process of dying is agonizing.  Didn't take me long to realize that I wanted to be healed quickly, or die quickly. 

Sending positive thoughts your way and asking if you can't delay this decision for a few days until you've had a chance to really weigh it all?

Wolfter
Judging someone does not define them, it defines you. 

True peace is not merely the absence of war, it is the presence of justice.

Offline phildinftlaudy

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  • sweet Ann what you think babe...
Re: thinking about stopping my meds
« Reply #3 on: September 04, 2013, 07:47:09 PM »
Right now as it is I am thinking about stopping my meds...I am not a denialist & know I will eventually get sick but i wasn't ready for treatment. I dont know if I ever will be. As hard as I've tried I just can't accept this & taking pills twice a day reminds me of it...I just want to completely forget it even if for only a little while. I think I would have rather lived not knowing until I got sick. At least that way I would still feel like me & not hurt so much...

 I know probably noone will understand this....but its just how I feel right now

tipptu - definitely understand that we go through a variety of feelings - whether an LTS or someone newly diagnosed....

While I am not going to lecture you.... I can only hope that "stopping my meds" only stays a thought and that you continue to talk about it here and with others in your support network or your doctor... Perhaps, it is the med(s) you are on? Perhaps there are other things going on that have you feeling this way....

I can tell you that one thing about HIV that has become very clear to me over the past few months is that if we don't treat it, we have no say so in the way it goes about destroying us..... we don't get to pick the opportunistic infections and other effects we will or will not get, we don't get to pick how those OIs will impact us, and sometimes we don't even know if we will be able to make it back..... I don't know if you read the thread the titled "Death" or if you had the chance to read the thread I just posted regarding my brother getting sick and recently dying from untreated HIV/AIDS...

Seeing him, a skeleton who could not control his bodily functions and had to have things done to him to try to keep him alive that I know were probably equivalent to the pain the disease was causing as it ravaged his body, his mind, and his spirit put this disease into a very very real perspective for me... I had seen these things from a distance before, had heard them from others, had saw pictures and movies - but nothing can prepare a person from seeing the devastating effects that untreated HIV/AIDS has on a person - and this disease will take a person to the brink of death and deny the person that death, just so it can take him or her even further down into more pain and hopelessness than they had even previously felt....

Don't know if this makes sense or not -

I'm glad you shared how you are feeling...and what you are thinking - I just hope that you will use whatever tools, resources, and support are available around you and on  here to get past this feeling and these thoughts.

http://forums.poz.com/index.php?topic=50286.msg602660#msg602660

Wishing you the very best....
And keeping you in my thoughts....

-Phil
September 13, 2008 - diagnosed +
Labs:
Date    CD4    %   VL     Date  CD4  %   VL
10/08  636    35  510   9/09 473  38 2900  12/4/09 Atripla
12/09  540    30    60   
12/10  740    41  <48   
8/11    667    36  <20  
03/12  1,041  42  <20
05/12  1,241  47  <20
08/12   780    37  <20
11/12   549    35  <20
02/12  1,102  42  <20
11/12   549    35  <20

Offline tippytu

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  • Posts: 60
Re: thinking about stopping my meds
« Reply #4 on: September 04, 2013, 08:34:01 PM »
I have thought about this for a while...I just don't want to deal with it..I really don't have a support group & really not interested in any face to face..I've hard very hard time finding other support... I actually dont see an ID Dr until October... on meds I was given during pregnancy...the person handling my case is supposed to be getting a psychiatrist to call me to prescribe me more depression medication but he is taking his sweet time getting a hold of me...


 I just want my old life back!!!!

Online mitch777

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Re: thinking about stopping my meds
« Reply #5 on: September 04, 2013, 08:51:27 PM »
tippy,
your support group is here.
please know this. we are not just a figment of your imagination. we are real people reaching out to you.
m.

ps-boring, I know. I hope you consider that I am and have been doing well for the most part after living with hiv for over 30 years. life is good! taking a pill or 2 a day is nothing, zero, ziltch. the adjustment is rougher on some and I understand that. you will come to a good place in your mind and heart sooner than you may realize.
please give yourself time to soak it all in.

I care.

« Last Edit: September 04, 2013, 09:13:16 PM by mitch777 »
31 years hiv+ (oct. 2013) with a curtsy.

Offline karry

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Re: thinking about stopping my meds
« Reply #6 on: September 04, 2013, 08:56:47 PM »
Hi Tippytu
I can't add to the wisdom in the words of those who have experimented with stopping their meds. You've heard them all: nothing good comes out of it. You make your health worse....not better. I can only ask you to think of your kids...you want to be there for them, from what you' ve mentioned in previouse posts...i am sure the one way to be there to see them grow and be there for them, is to stick to your meds.
If you need to talk to anyone for support i am here for you. We can exchange numbers via pm and i will call you.
Please hang in there.
Hugs to you
K.
Take it a day at a time....and be positive about it too!

Offline karry

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Re: thinking about stopping my meds
« Reply #7 on: September 04, 2013, 09:02:15 PM »
Tippytu
My partner will be seeing his Dr Friday to be switched to a pill he needs to take only once a day. Maybe you could discuss this with your Dr next time? Many negative people take a vitamin a day...I don't want to compare ARVs with a vitamin, but just looking at a means for you to view taking a pill or two a day in a creative way.
Karry
Take it a day at a time....and be positive about it too!

Offline tippytu

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Re: thinking about stopping my meds
« Reply #8 on: September 04, 2013, 09:10:48 PM »
Yes sorry I know that y'all are!  I'm just sooooo depressed anxious scared!! Want to just go back to a normal life & forget this nightmare & everytime I have to take the pills it reminds me!

Online mitch777

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Re: thinking about stopping my meds
« Reply #9 on: September 04, 2013, 09:22:44 PM »
I remember how it was like to be depressed, anxious, and scared. I know that a reminder of a pill can set off alarms but they will go away. I promise.
31 years hiv+ (oct. 2013) with a curtsy.

Offline jkinatl2

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Re: thinking about stopping my meds
« Reply #10 on: September 04, 2013, 09:56:19 PM »
So what scares you, exactly?

On July 7th of this year, you wrote:

Quote
I hope to see my grandchildren.

on July 10th you wrote:

Quote
So I guess I've finally convinced myself that I am not gonna die tomorrow (well not from HIV anyway)
But my question is can you live with this & not get sick? I don't mean AIDS I mean like any of the associated illnesses that come along with HIV?

By now you know that if you take your meds you will almost certainly live to see your grandkids - and great-grandkids (and if you are OK with being a head in a jar, your great-great-great grandkids and beyond). You have a lovely baby. You have the rest of a long life ahead of you.

Is there any chance that this could be postpartum depression? What does your counselor say?

BTW there are ways to go off meds and not develop resistance. You need to go by your doctor's recommendation there, though.

I certainly hope you can work through this. It would be a terrible and totally avoidable tragedy to lose you.


"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

-Kimberly Page-Shafer, PhD, MPH

Welcome Thread

Offline tippytu

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Re: thinking about stopping my meds
« Reply #11 on: September 04, 2013, 10:52:36 PM »
I'm scared of being sick.  I'm scared of things happening due to long term use of drugs.. I'm terrified people will find out...I hate the way I feel about myself now & just can't imagine feeling this way forever...feeling anxious all the time. Feeling like I am less than others now because of this..

Sorry if I'm rambling or don't make sense I have had some memory problems a lot lately

Offline oksikoko

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    • the treatment cascade
Re: thinking about stopping my meds
« Reply #12 on: September 04, 2013, 11:02:56 PM »
I'm scared of being sick.  I'm scared of things happening due to long term use of drugs.. I'm terrified people will find out...I hate the way I feel about myself now & just can't imagine feeling this way forever...feeling anxious all the time. Feeling like I am less than others now because of this..

Sorry if I'm rambling or don't make sense I have had some memory problems a lot lately

You're making a lot of sense. Many of us have felt some or all of these things at some point. You don't have to feel like you're "less than" anyone else because of HIV, because you're not. You're whatever you were before, but probably a little better since you've now gone through a bit of the fire.

Just hold out on making any serious drug decisions until you speak to your doctor or therapist or the psychiatrist, OK? If they're taking a long time getting back to you, reach out to them.
Code: [Select]
2013-10-03:                ☣ VL (=) undetectable ☣ CD4 (+) 1105
2013-05-23:                ☣ VL (=) undetectable ☣ CD4 (-) 945
2013-02-25:                ☣ VL (-) undetectable ☣ CD4 (+) 1123
2012-12-16: Enter Stribild
2012-11-20: HIV+           ☣ VL (→) 132,683      ☣ CD4 (→) 920
2012-04-01: HIV-
Dates in this signature file conform to ISO 8601. ;-)

Offline jkinatl2

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Re: thinking about stopping my meds
« Reply #13 on: September 04, 2013, 11:12:25 PM »
I'm scared of being sick.  I'm scared of things happening due to long term use of drugs.. I'm terrified people will find out...I hate the way I feel about myself now & just can't imagine feeling this way forever...feeling anxious all the time. Feeling like I am less than others now because of this..

Sorry if I'm rambling or don't make sense I have had some memory problems a lot lately

You DO make sense!

Just please, try to understand that this whole  Long-term thing is ridiculous. EVERY YEAR new advances come out. Hey, I am dropping two pills a day thanks to re-formulation of my Prezista. And I am part of a experimental group that is testing a med regimen that's only one treatment every six months.  And beyond that, who knows? Once a month meds? Twice a year?

Since I tested positive there have been so many HUGE advances in meds. Sixteen pills a day? Pshaw. Try one. Or four.

I stayed alive for years on the verge of exhausting the last available treatment. But somehow, luck and genes persevered. Now I am doing fine on a handful of pills a day.

Think for a moment how that pill load competes against things like cancer or other ailments. How much of your decision is based on fear of stigma, or even stigma itself?

Your baby needs you. Your family needs you. We need you. And you have the choice to stay healthy, and all it takes is a few pills a day. What they remind you of is immaterial, but if I might interject - maybe it should remind you of your baby growing up and taking steps and learning the ABCs and going off to school with Mom there, healthy and capable, each step of the way. Maybe those pills should be considered your insurance policy to make certain that your kid's first love affair (which, SPOILER ALERT) will end in heartbreak, won't be suffered without Mom to be there (or, lets face it , Mom is going to have the door slammed in her face a lot. But being on the other side of that slammed door is a priceless thing).

Your life holds such promise, such hope. There is NO VALID REASON why anyone diagnosed with HIV today should die from AIDS (terribly tragic outliers aside of course).

You have a choice that no one had twenty years ago. You can live! You can be healthy! You can be a mom, a grand-mom, a GREAT grand mom! You can write HIV/AIDS off the list of stuff that will kill you (everyone underestimates asteroids). The biggest battle you will face in HIV is the one with yourself.

Don't let that awful mirror YOU kill the real you. Please.

It's just a few pills twice a day. And the reward is ... so much .. it is everything wonderful being human has to offer.

You are literally surrounded by love from creatures who need you here.

"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

-Kimberly Page-Shafer, PhD, MPH

Welcome Thread

Offline Billy B

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Re: thinking about stopping my meds
« Reply #14 on: September 05, 2013, 12:26:47 AM »
Hi Tippy,  What meds are you taking now? They could be screwing with your head and maybe a change is needed. My first time on meds I wigged out and after a very short break I started new meds and it is all good. I figured that I will get flamed for my comments, but what the hell it is the truth.
When my sister was dying from breast cancer she often commented that I was the lucky one because I had chemo that was keeping me alive, well and productive and there wasn't anything that her doctors could do for her. I am still pissed because here I am with something I acquired and I am alive and she died through no actions of her own.
So sister Tippy just take a deep breath and just relax. Find some meds that are a good fit for your body and in a short time you will realize that it isn't a big deal. I now take my meds without a second thought except when I think about what my sister used to tell me.
Peace Tips,
Billy B
« Last Edit: September 05, 2013, 12:40:46 AM by Billy B »
VL 4420 CD4 340 CD4% 24   3/15/10 Started I&T
VL  UD   CD4 340 CD4% 26.5 05/13/10
VL  UD   CD4 360 CD4% 27.1 08/3/10
VL  UD   CD4 310 CD4% 28.4 11/22/10
VL  UD   CD4 420 CD4% 27.9 02/11/11
VL  UD   CD4 370 CD4% 26.4 06/08/11
VL  UD   CD4 360 CD4% 27.7 09/23/11
VL  UD   CD4 370 CD4% 28.3 01/20/12
VL  UD   CD4 430 CD4% 28.8 05/11/12
VL  UD   CD4 370 CD4% 28.1 09/07/12
VL  UD   CD4 390 CD4% 32.3 03/14/13

Offline positivelynerd

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  • Life isn't a struggle, it's a wiggle.
Re: thinking about stopping my meds
« Reply #15 on: September 05, 2013, 05:30:09 AM »
Hi Tippy,
Thanks for opening up to us and sharing your thoughts.  I hope you realize what a huge step that is in your road to recovery.  It takes a LOT of strength and courage to sit down and talk about the very painful emotions you're experiencing.  Like the others have said, others with decades of experience more than I, these are normal feelings and many of us have been exactly where you are. 

You said you don't want to get sick, but not taking your meds, you're guaranteed to get sick eventually.  We have to be active participants in our desire to stay healthy, regardless of our status, whether it's eating properly, exercising, not smoking, or taking pills. 

Hang in there.

Sending you big hugs,
-Nerd
5/25/12 Seroconversion
9/25/12 Diagnosed
10/12/12: VL- 799k, CD4 285
10/25/12 VL- 599k, CD4 274 
Started Sustiva + Epzicom
11/8/12: VL- 1790, CD4 412, 24%,
11/20/12: VL- 1470, CD4 350, 28%
12/19/12: VL- 584, CD4 293, 24%
1/16/13: VL- 411, CD4 404, 27%
2/13/13: VL- 314, CD4 523, 20%
3/13/13: VL- 171, CD4 404, 26%
4/10/13: VL- 96, CD4 397, 27%
5/8/13: VL- UD, CD4 422, 26%
6/5/13: VL- UD, CD4 462, 31%
7/24/13: VL- UD, CD4 559, 33%

"The most beautiful thing we can experience is the mysterious. It is the source of all true art and all science. He to whom this emotion is a stranger, who can no longer pause to wonder and stand rapt in awe, is as good as dead: his eyes are closed." -A. Einstein

Online mecch

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Re: thinking about stopping my meds
« Reply #16 on: September 05, 2013, 06:19:18 AM »
 tippytu
You want your "old life back" but it's gone. But its not your entire life. The thing that is gone is being hiv -

I read your posts and you are too smart and aware, to expect a "forgetting time" to work. You won't forget that you are HIV+.   

Try to think of the medication as building a better life now and for the future.   I understand its a reminder...  But remember,  the treatment is not a big deal.  Being HIV+ is a big deal for you. 

Now you need to treat the depression.  And learn to lesson the anxiety about being HIV+ and also learn some more.  That should be your objective...  Stopping meds won't help.  And will hurt everything - your physical and mental health, and your family.   I think you are saying you are suicidal. Overwhelmed.  If you stop the medicine, you'll still be suicidal. 

I am pretty sure "forgetting HIV" simply won't work for you. You can stop the drugs, but I promise you will NOT forget you are HIV+.   If you could really benefit from delusions and forgetting, then maybe you wouldn't be suffering as much, now.  But you are a person who is fully aware....

« Last Edit: September 05, 2013, 06:37:20 AM by mecch »
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline ratcat

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Re: thinking about stopping my meds
« Reply #17 on: September 05, 2013, 08:54:03 AM »
My ex GF wanted to forget, had a relaxed attitude concerning her HIV and thought that she could wait until she got sick and then start treatment.  SHE IS DEAD.  And, it was not a pretty death.

She left me alone, as well as her family who needed her morally and financially, not to mention all of her friends she abandoned.   It was very selfish and stupid of her and it hurt a lot of people and cost her..... her life! Remember, not all opportunistic infections can be fixed. 

Don't you have a child?  Get over it.  I take meds.  They taste great.  ;)

Offline Jeff G

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Re: thinking about stopping my meds
« Reply #18 on: September 05, 2013, 09:00:10 AM »
My ex GF wanted to forget, had a relaxed attitude concerning her HIV and thought that she could wait until she got sick and then start treatment.  SHE IS DEAD.  And, it was not a pretty death.

She left me alone, as well as her family who needed her morally and financially, not to mention all of her friends she abandoned.   It was very selfish and stupid of her and it hurt a lot of people and cost her..... her life! Remember, not all opportunistic infections can be fixed. 

Don't you have a child?  Get over it.  I take meds.  They taste great.  ;)


Do you realize how you make yourself look when you tell people to " get over it " You have repeatedly told people to get over it when they are in crisis and its appalling quite frankly .

 

Online mecch

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Re: thinking about stopping my meds
« Reply #19 on: September 05, 2013, 09:23:38 AM »
tippytu -

1) (IGNORE RATCAT!)

2) I thought you could think about something. Imagine you stopped treatment this week.  And you want the relief of "not remembering" you have HIV.  The first strep throat or flu of Autumn or winter, you are going to remember, and you'll be really really anxious - is this the end already?  Just a few months? That's all I got? 

I had to go on treatment pretty fast.  But there were quite a number of advantages. 

For example, now when I get sick, I go to my GP, and we don't even discuss my HIV+ status... It's not the issue.  My HIV infection is effectively controlled. 

Once you can "feel" that - that your HIV infection is dealt with -- you'll have great relief.  This makes it SO much more possible to deal with the social and emotional challenges of living with HIV.

The last thing you need to be worrying about is that HIV has power over you. Because that daily dose pretty much takes care of its power over your body....


“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline wolfter

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Re: thinking about stopping my meds
« Reply #20 on: September 05, 2013, 09:36:11 AM »
I believe many here, if not most, have witnessed firsthand what this decision entails.  We've witnessed friends, and in many instances, ourselves dealing with consequences of doing away with meds.

It's probably just natural to relate our feelings at the time, trying to understand why this decision was made.  I absolutely understand the desire to stop it all.  To simply fade away and make everything stop.  HIV in itself wasn't my catalyst, but instead grabbed ahold of me in my deepest darkest period.  I had suddenly found myself in a deep dark abyss that I couldn't pull out of.

Many of us probably recognize what this decision is; a sanctioned method of suicide.  A way of ending it all without the morality and shame attached to actually committing the act. 

I'd suggest ignoring anyone who ever suggests "just get over it".  That does nothing to address the issues and presumes it always within a person's ability to magically be well.

Again, I hope you stick around and heed some of our advice and listen to some of our stories and experiences.

Wolfie
Judging someone does not define them, it defines you. 

True peace is not merely the absence of war, it is the presence of justice.

Offline aaware72

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Re: thinking about stopping my meds
« Reply #21 on: September 05, 2013, 11:30:43 AM »
Yes sorry I know that y'all are!  I'm just sooooo depressed anxious scared!! Want to just go back to a normal life & forget this nightmare & everytime I have to take the pills it reminds me!

I do understand being scared and there are still thing that I fear.  All I can offer is it does get better.  I take 1 pill a day for HIV this is in addition too my multpi vitamin/minerial, fish oil, L-Caritine, and iron.  I have  been taken these supplement to help maintain/improve my health before I found out I have HIV.  The difference now is I just now take 1 more pill to improve my health.
"Yes, knowledge is power. Self-knowledge brings mastery of one's body."

Offline tippytu

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Re: thinking about stopping my meds
« Reply #22 on: September 05, 2013, 12:02:25 PM »
I will just ignore the "get over it" comment!! Because obviously if I could just get over it I would!! & yes as a matter of fact I have 4 children!  I amttrying to hang on there... trying to do all I can to beat depression & make the situation better...exercise, eating right, counseling, support here & I actually told a family member (which did not help because now I just obsess they are going to tell someone else)

I'm tired ..tired mentally tired physically tired emotionally... tired of a husband who does not want to communicate, tired of being paranoid, tired of feeling bad about myself...

I just don't want to deal with it! I have to have corrective plastic surgery later this year & I do not want to tell the plastic surgeons office...terrified they will refuse to treat me or make me feel bad as I've already witnessed this change in peoples attitude & demeanor. I had to take the baby to have blood drawn & the registration lady was saying how cute she was & playing with her until she printed out the DR's orders & saw HIV+ all over the page...then you would've thought my baby & I were the most disgusting thing she'd ever seen!

Online mecch

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Re: thinking about stopping my meds
« Reply #23 on: September 05, 2013, 12:48:37 PM »
Did you get the baby's results?  Still negative?

Sometimes you jump directly to the fears and worst case scenario but don't communicate the whole story...  What did the family member say when you disclosed?

Has any doctor heard about your depression and any feedback on the possibility that its post-partum depression?  I heard about the frustrating wait for a shrink. Who would you consider your primary caregiver now? GP? HIV doc? Obstetrician?

Any movement on getting some help around the house? 
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline Joe K

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Re: thinking about stopping my meds
« Reply #24 on: September 05, 2013, 01:15:14 PM »
I will just ignore the "get over it" comment!! Because obviously if I could just get over it I would!! & yes as a matter of fact I have 4 children!  I amttrying to hang on there... trying to do all I can to beat depression & make the situation better...exercise, eating right, counseling, support here & I actually told a family member (which did not help because now I just obsess they are going to tell someone else)

I'm tired ..tired mentally tired physically tired emotionally... tired of a husband who does not want to communicate, tired of being paranoid, tired of feeling bad about myself...

I just don't want to deal with it! I have to have corrective plastic surgery later this year & I do not want to tell the plastic surgeons office...terrified they will refuse to treat me or make me feel bad as I've already witnessed this change in peoples attitude & demeanor. I had to take the baby to have blood drawn & the registration lady was saying how cute she was & playing with her until she printed out the DR's orders & saw HIV+ all over the page...then you would've thought my baby & I were the most disgusting thing she'd ever seen!

Hey Tippy,

I'm so sorry you are having such a difficult time.  Given what you have shared, it's easy to see how you have become overwhelmed by the events in your life.  You say you don't want to deal with it all, but that's not what your actions tell me.  If you didn't want to help yourself, you would not be here seeking our support.

Asking for help during times of great stress and uncertainty, is the trait of a very powerful person.  It's always easier to just give up hope.  What's tough, is to acknowledge that some things are too great for us to deal with alone and to seek out others to help us along the way.  As I said, this is not the action of someone looking to just give it all up, rather it's a plea for help and that takes an incredible amount of personal fortitude and I hope you realize that fact.

As I read your posts, I feel there are two major issues that are facing you.  The first seems to be how you feel about yourself and I believe that we all understand how powerful that feeling can be.  In a way, only time will help you to heal, however, I urge you to reconsider how you perceive yourself.  I cannot help but notice that you are using negative words to describe yourself, somehow negating all the positive aspects of who you are.

What I see, is a powerful mother of four, who happens to be poz and is trying her best to make sense of this new world.  I understand those feelings, however I caution you, that just because you "feel" something, does not make it true.  Feelings are neither good nor bad, they just are.  It's the actions that can create issues for us and I would suggest that you allow yourself to feel, whatever it is you feel, without the need to do something about all of it.

This leads me to what I consider to be your other major issue and it's tied in with how you view yourself.  You seem overly concerned with what others think about you and all I can offer is that is no way to live your life.  Everyone has an opinion, but it doesn't mean you have to take them to heart.  If you feel secure in who and what you are, the opinions of others become almost meaningless.  For me, the only opinions that I cherish are those from folks who know me, or those whom I respect, because they either actually know me or conduct themselves in ways that I wish to emulate.

It took me a long time to stop worrying about what others thought of me, however, once that yoke was removed, I became much happier and content with myself, because my self-views were tempered by what I knew was true about myself.  I learned that I can't live my life to please others, because they are not me.  More importantly however, is that I don't need the approval of anyone to live my life as I see fit and neither do you.

I believe that if you can somehow alter how you see yourself, that your self esteem will grow and with it, the knowledge that you are much stronger that you even realize.  You are a strong woman, a wife and mother and now you are poz and you wonder why you are on overload?  You really need to give yourself a break.  Just because you can't do everything you want to, all the time, does not mean there is anything wrong with you... other than simply being human.

The last thing I wish to share is the fact that you are the same woman you were, with the only difference now, is that you are poz.  Being poz does not demean who and what you are, only you can do that to yourself.  I suspect that you know all of this and just needed a reminder.  I believe you can and will get past this, as you have shown that you are no where near surrendering anything to anybody.

If there is anything that I can do to help, please don't hesitate to ask.

Joe
Life is what happens, when you are busy making other plans.

Though you may be only one person in the entire world, to one person, you may be the entire world.

I wish to become half the man, that my dog thinks I am.

Remember me with simple acts of kindness and I will live forever.

Offline tippytu

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Re: thinking about stopping my meds
« Reply #25 on: September 05, 2013, 01:28:17 PM »
Sorry I dont know how to quote...still waiting for baby to turn a certain age before last test can be ran.

As far as Doctors go...GP-told me I was positive on the phone while at work! Will never return there! HIV dr-still waiting on first appt ob gyn-is 3 hours away & I cannot take off work to see her ..asked her over phone she said she didn't feel safe prescribing me something else said to ask go, or psychiatrist (no psychiatrist within 2 1/2 hours of me again no time off from work) been waiting 9 days now for a psychiatrist to return my call!!

Family member.... well she seemed supportive but also ignorant of the situation which I can't blame them I was too before I was diagnosed!

As far as help at home none.


Offline tippytu

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Re: thinking about stopping my meds
« Reply #26 on: September 05, 2013, 01:37:48 PM »
Oh & I'm taking isentress & truvada

Online mecch

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Re: thinking about stopping my meds
« Reply #27 on: September 05, 2013, 02:33:31 PM »
Well im sending good hopes and wishes for a few things then
That your kid stays negative.
That the family member proves helpful when she has more time to digest.

Where are your kids when you are at work?  Its so clear you could use some help with daily stuff.  Unfortunately I am far away and don't know anything about what might be available in your location and your situation.  We discussed once that maybe the church might be a place to find help.  Im not talking about dealing with HIV i mean just dealing with all the stuff you have to juggle everyday with a family, job etc. 
I know sometimes there are "mothers helpers" for mothers with post-partum depression but of course haven't a clue if such a thing exists in Louisiana and how one gets services like that.
You've been waiting rather long for a first ID doc appointment.. Whats the holdup? Distance???
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline tippytu

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Re: thinking about stopping my meds
« Reply #28 on: September 05, 2013, 02:42:33 PM »
Kids are at school & daycare while I work...the wait for the Dr appointment is that is how far they are booked out..

Offline Theyer

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Re: thinking about stopping my meds
« Reply #29 on: September 05, 2013, 03:30:02 PM »
Hello Tippytu ,

I have just read through your thread and would like to say that you have  strength,s that leave me feeling humble . Stay with it and us and I hope that you will soon see and feel how incredibly strong you are .

For one thing you have already managed to not accept the geographic isolation you have by finding us. During this awful shock You hold down your job, and you are the Mother off 4 children , I am left breathless

Living in London , the distances some people have to manage amaze me.
Your work sounds very inflexible , is there anyway that an appointment for you can be wrapped up as an appointment for your child or would that too fall on un caring ground ?

So I will sign off now sending you my best wishes , Tippytu
Michael

"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline oksikoko

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Re: thinking about stopping my meds
« Reply #30 on: September 05, 2013, 07:52:50 PM »
I had to take the baby to have blood drawn & the registration lady was saying how cute she was & playing with her until she printed out the DR's orders & saw HIV+ all over the page...then you would've thought my baby & I were the most disgusting thing she'd ever seen!

Tippy, I'm sorry this happened to you. She shouldn't really be working in a hospital or clinic if people with medical conditions make her uncomfortable, but whatever was wrong with her that day, she shouldn't have spread the discomfort to you. :-/
Code: [Select]
2013-10-03:                ☣ VL (=) undetectable ☣ CD4 (+) 1105
2013-05-23:                ☣ VL (=) undetectable ☣ CD4 (-) 945
2013-02-25:                ☣ VL (-) undetectable ☣ CD4 (+) 1123
2012-12-16: Enter Stribild
2012-11-20: HIV+           ☣ VL (→) 132,683      ☣ CD4 (→) 920
2012-04-01: HIV-
Dates in this signature file conform to ISO 8601. ;-)

Offline Theyer

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Re: thinking about stopping my meds
« Reply #31 on: September 06, 2013, 06:17:46 AM »
Tippy, I'm sorry this happened to you. She shouldn't really be working in a hospital or clinic if people with medical conditions make her uncomfortable, but whatever was wrong with her that day, she shouldn't have spread the discomfort to you. :-/

She should off actively worked to make sure you left her feeling that this was a place you wanted to attend.
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline phillypinko

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Re: thinking about stopping my meds
« Reply #32 on: September 06, 2013, 12:45:38 PM »
I have thought about this for a while...I just don't want to deal with it..I really don't have a support group & really not interested in any face to face..I've hard very hard time finding other support... I actually dont see an ID Dr until October... on meds I was given during pregnancy...the person handling my case is supposed to be getting a psychiatrist to call me to prescribe me more depression medication but he is taking his sweet time getting a hold of me...


 I just want my old life back!!!!
I've been infected since I was 20 in 1992 and STILL want my old life back. Try writing about what you're feeling and experiencing. That has really helped me. I often think about what might have been and beat myself up for not having safe sex but in the end I look back on the last 20 years and realize I wouldn't have travelled the world or had any of the incredible experiences I've had if I didn't test positive. I don't know what im going to do with the rest of my life but I didn't let HIV get in the way of me having fun the last 20 years. Just remember that sometimes something good comes out of an event we perceive to be bad!

Offline whymeetc

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Re: thinking about stopping my meds
« Reply #33 on: September 06, 2013, 03:00:26 PM »
Hi Tippy, please don't stop taking your meds. All it will do is make you sick and complicate things. Maybe you could switch to a once a day med? I know how you feel about wanting your old life back. You gotta forgive yourself.

I've had the disease for a little over a year now. I was very distraught at first but I've found that HIV is mostly just annoying. Other than taking a pill at night everything else is pretty much the same. I don't get sick more often or anything.

Do you have a case worker? Even though you might not need one it's nice to have one, they can connect you with hiv friendly doctors, therapists, support groups and such. Plus it's nice to have a cheerleader and know that you have a safety net if you ever need it.

About your surgery. Maybe you could do what I did when I was afraid to tell my dentist? I called them with a blocked number and asked if they treated patients with HIV, and sorta gauged their reaction. Everything went fine!

Best of luck with everything. I know it's tough but you have to keep going, you have 4 little ones relying on you! They don't care that you're hiv positive.
September 4, 2012

Offline tippytu

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Re: thinking about stopping my meds
« Reply #34 on: September 06, 2013, 03:54:51 PM »
Yes I could call that office but if they say no...which I'm pretty sure they are not allowed to by law...then there's a problem because my problem right noe the Dr is supposed to fix for free...I do not want to tell them I'm positive do not want to see their reactions or be treated any different. So I plan to have the surgery & not mention the HIV

Offline tippytu

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Re: thinking about stopping my meds
« Reply #35 on: September 06, 2013, 04:09:37 PM »
Just want to let everyone know I am taking what you say to heart...I have read & reread messages. I'm trying I just Want this overwhelming crushing sadness gone! Sometimes even when I do forget about HIV & I'm having fun it'll hit me like a ton of bricks & I think to myself your not allowed to have fun your HIV+...(I know that sounds crazy)

I remember when they should bring people in to our school to talk about HIV&aids & I remember thinking how horrible it must be for them...bit they again only mentioned high risk groups! Gay men...not that drug user...not that....multiple partners....not that!! But still ended up HIV+ from my husband!!!
 
It's not fair" I know life's not fair but still I'm extremely pissed...think they should do away with high risk groups & test everyone" because obviously anyone can be affected by it

I still have so many unanswered questions & I'm just ready for peace in my mind & heart

Offline oksikoko

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Re: thinking about stopping my meds
« Reply #36 on: September 06, 2013, 04:11:31 PM »
Yes I could call that office but if they say no...which I'm pretty sure they are not allowed to by law...then there's a problem because my problem right noe the Dr is supposed to fix for free...I do not want to tell them I'm positive do not want to see their reactions or be treated any different. So I plan to have the surgery & not mention the HIV

1) Is that legal? You even have to disclose for a tattoo...

2) It really sucks that the medical establishment has lost your trust. If there's anyone you should feel comfortable being honest with, in theory, it's a doctor, but from your story, I see why you might feel you'd get less than perfect care if you told the truth. I don't know what city you're in, but I hope someone has a suggestion beyond mine which is just to try to find a doctor through your ASO who you *know* is HIV-neutral, i.e. poz-friendly.

My first doctor treated me like a diseased whore, so I understand where you're coming from, but through GMHC (and via a recommendation on the forums) I found a much better full-service clinic than I actually enjoy going to. I was just there today, in fact. I'm sorry I missed some of the convo, but do you have an ASO (AIDS Service Organization) where you are? It seems you, understandably, have a lot on your plate due to HIV, and those organizations exist to help you put all these pieces in place. I live in NYC, and even here I would have been lost completely on what to do next if I hadn't been able to ask people at GMHC...
Code: [Select]
2013-10-03:                ☣ VL (=) undetectable ☣ CD4 (+) 1105
2013-05-23:                ☣ VL (=) undetectable ☣ CD4 (-) 945
2013-02-25:                ☣ VL (-) undetectable ☣ CD4 (+) 1123
2012-12-16: Enter Stribild
2012-11-20: HIV+           ☣ VL (→) 132,683      ☣ CD4 (→) 920
2012-04-01: HIV-
Dates in this signature file conform to ISO 8601. ;-)

Offline oksikoko

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Re: thinking about stopping my meds
« Reply #37 on: September 06, 2013, 04:12:46 PM »
Sometimes even when I do forget about HIV & I'm having fun it'll hit me like a ton of bricks & I think to myself your not allowed to have fun your HIV+...(I know that sounds crazy)

Just for the record, I'm HIV+ and having the time of my life. ;) It can happen, and you'll come to terms with this, really. :) Just hold on and keep trying to move forward.
Code: [Select]
2013-10-03:                ☣ VL (=) undetectable ☣ CD4 (+) 1105
2013-05-23:                ☣ VL (=) undetectable ☣ CD4 (-) 945
2013-02-25:                ☣ VL (-) undetectable ☣ CD4 (+) 1123
2012-12-16: Enter Stribild
2012-11-20: HIV+           ☣ VL (→) 132,683      ☣ CD4 (→) 920
2012-04-01: HIV-
Dates in this signature file conform to ISO 8601. ;-)

Offline tippytu

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Re: thinking about stopping my meds
« Reply #38 on: September 06, 2013, 08:39:07 PM »
Well I have to use this specific Dr for these surgery otherwise I will have to pay for it & I can't! I live in very rural Louisiana no aso's close..

Online mecch

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Re: thinking about stopping my meds
« Reply #39 on: September 07, 2013, 02:46:07 PM »
Can you still use the services of an ASO and have them accommodate the distance? There's the telephone and the internet?  It seems we can send positive energy and support your way on this forum however it has been my impression since your first posts that you could also benefit a lot by some sort of social worker advocating for you and referring you to people/services/info etc. LOCALLY...  You've had so many really unfortunate delays getting appointments, for example...  It must be very difficult. I might easily have gone nuts if I had to waits months to see an ID, or shrink.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline tippytu

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Re: thinking about stopping my meds
« Reply #40 on: September 08, 2013, 04:44:18 PM »
Maybe there is a national aso I can contact. I do go to counseling but she is not a psychiatrist.. yes very aggravating to have to wait so long to see a Id Dr but I'm already on meds & when they tested me when I gave birth CD4 was going up & viral load ud. So I guess that helps already knowing that..


As for right now I'm still just meddling along hoping for better days. Days I feel more like myself..I did finally get another anti depressant so hoping that helps too..


 Going to take the meds at least till I see ID dr

Offline Jeff G

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Re: thinking about stopping my meds
« Reply #41 on: September 08, 2013, 04:48:59 PM »


Going to take the meds at least till I see ID dr

The forum will come and camp out in your front yard if you don't take your meds as a not so silent protest .  :)

Offline anniebc

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Re: thinking about stopping my meds
« Reply #42 on: September 08, 2013, 04:53:10 PM »
What Jeff said, but don't make me do that Tippy I live in NZ and it's a bloody long trip.

I know it's hard for you right now, but in time you will realise that staying on meds is the right thing to do, I'm pretty sure you want to see your wee one grow up and get married, right?

I have 14 grandkids and 2 great-grand kids, without the meds I wouldn't have been here to see 6 of them arrive.

Hang in there you know it's worth the wait.

Aroha
Jan
« Last Edit: September 08, 2013, 04:56:14 PM by anniebc »
-----------------------------------------------------------------------
Never knock on deaths door..ring the bell and run..he really hates that.

Online mecch

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Re: thinking about stopping my meds
« Reply #43 on: September 08, 2013, 05:54:44 PM »
You on an anti-depressant now, and switching? Or off the old one, and starting a new one?

I don't know about a "national aso".  There are ASOs in your state and perhaps the key is talking to them, explaining the geographic isolation, but the need for services, and finding one that can deliver in these constraints. 

I shall ask, are you hesitating to see social workers / case managers at an ASO in your state because of hesitancy about disclosure and possible bias? 

Or, are the services bad, or unnecessary, by your previous experience or present estimation? 

Or, have they refused to accommodate your working person, and distance, constraints? 

“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline tippytu

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Re: thinking about stopping my meds
« Reply #44 on: September 08, 2013, 07:36:24 PM »
Taking one anti depressant & adding another.

Only one time did a social worker come see us at our daughters appointment & we nixed the conversation pretty quickly when she said she was gonna ask some touchy questions...& if my hubby knew he was infected...I did not see the relevance in those questions

Online mecch

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Re: thinking about stopping my meds
« Reply #45 on: September 08, 2013, 07:57:16 PM »
You have a pretty deep distrust of professionals.  I can say this, you are bound to meet some less competent professionals.  You are bound to meet impolite or rude professionals here and there.  I don't think its the rule, more the exception.

Its always ok to have a dialogue with any professional. Good one or bad one.  Polite one or rude one. 

If you think someone is out of line, you can say thats what you feel, or think. If you don't understand information or advice that is being offerred, you can ask for clarification.  If you doubt the legitimacy of a question, ask why the question is important. 

Generally, shutting down, withdrawing, judging, only hurts you.  Doesn't carry the situation forward and doesn't get at the services you MAY need, referrals, and any advice that MAY help you.

We deal with such people because we have a need and they have expertise... They don't need to be our friends or even likable people...  If you fear judgement and/or hatred, it may not matter, even if there is a smidgin. We don't need their acceptance. We only need their expertise.

Im not sure you should insist on such control and isolation.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline tippytu

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Re: thinking about stopping my meds
« Reply #46 on: September 09, 2013, 09:52:33 AM »
Mecch,

  I understand what you are saying & it makes sense. I don't think its just professionals I don't trust its everyone in general..
I'm hard headed & stubborn!

As far as the social worker goes it was like 4 months after diagnosis & it would've helped if they would've come in & explained who they were what they could do for us etc...instead of questions! I know I should've asked her that but my head was spinning..& we were so sick of questions from everyone!! .I've never been in this situation & do not know anyone who ever has been so everything is confusing to me!

I probably could've dealt with it better I agree

Offline Habersham

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Re: thinking about stopping my meds
« Reply #47 on: September 10, 2013, 05:14:58 AM »
Tippy have you thought of calling the social worker back? It's not a one opportunity deal.

Here's some info on what services they may provide.


http://www.thebody.com/cgi-bin/bbs/showflat.php?C=&Board=living&Number=273152


Because I Can

Offline harleymc

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Re: thinking about stopping my meds
« Reply #48 on: September 10, 2013, 07:09:48 AM »
tippytu
I hear your pain. Like you and like Jeff I got to the same point. I also had a similar outcomes to Jeff, KS and other nasties.

AIDS is a really shitty way to die!
Almost any alternative is better than the nasty tricks that AIDS can do to your body and mind. But the good news is that once you get some meaning in your life, then you don't need to go through that mess.

Have a long think about the things that you enjoy, or have enjoyed in the past, go and do them. (Baby steps at first, make a realistic, achievable plan with a short time line...carry it out, then hit the next plan...)
Get a new life back and let yourself receive whatever help is available to make your life the best it can be.

Big Hugs to you

Offline Mishma

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Re: thinking about stopping my meds
« Reply #49 on: September 10, 2013, 12:32:14 PM »
 Although stopping your meds would eventually kill you it is really a permanent solution to a temporary problem. I've spent close to 30 years occasionally considering that option but other than my own "experiment of discontinuing HAART," which led to horrendous headaches, I've chosen to stick with the program as it were.

What drives me? Rage, anger, a sense that as a LTS guinea pig I'll make a difference in other's lives, responsibility to my family and love ones to be strong, and determination/hope that I will see a functional cure within my lifetime.

I'm continually asked by psychiatrists and virtually every physician if I have suicidal thoughts. My response is always the same, "Why would I want to kill myself when I  would get more satisfaction killing someone else." Not that I would actually act on the idea but my list of homophobes, politicians and a few health care non-providers is longer than the list to kill myself.

Good luck on dealing with your demons. I've got a whole closet of them myself. 
2016 CD4 25% UD (less than 20). 27+ years positive. Isentress, Truvada, Acyclovir, Clonazepam, Zolpidem, Bupropion, Lisinopril, Pravastatin, Quetiapine, Doxcycline, Testosterone, Suatriptan/Naproxen, Restasis, Dorzolamide, Latanoprost, Asprin, lortab, Levothyroxine, Fioricet, Restasis, Triamclinolone, Nitrostat.

Offline Mishma

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Re: thinking about stopping my meds
« Reply #50 on: September 10, 2013, 12:42:21 PM »


 [/quote] Don't you have a child?  Get over it.  I take meds.  They taste great.  ;)
[/quote]

Get back to us in ten years or so after you've walked in our shoes long enough. Get tough approaches to depression are counter productive.
2016 CD4 25% UD (less than 20). 27+ years positive. Isentress, Truvada, Acyclovir, Clonazepam, Zolpidem, Bupropion, Lisinopril, Pravastatin, Quetiapine, Doxcycline, Testosterone, Suatriptan/Naproxen, Restasis, Dorzolamide, Latanoprost, Asprin, lortab, Levothyroxine, Fioricet, Restasis, Triamclinolone, Nitrostat.

 


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